It’s “National Weatherman’s Day”

Weather is fascinating to me, especially since it only gets crazy if I have something planned. For instance, we have a flight out of LaGuardia planned for tomorrow afternoon but there’s a snowstorm looming over Manhattan. I’ve heard this storm could dump anywhere from 3 – 18 inches of snow (quite a large margin if you ask me), and every New Yorker I’ve talked to today has said something like “Oy, good luck getting out of here tomorrow, we shut down over two snowflakes.” So, to ask me to “celebrate” the sketchy job of reporting the weather, well, we’ll see how I feel about weathermen tomorrow. I’m kinda hoping this storm is just a bunch of hoopla. I will not be disappointed if they’re completely wrong and tomorrow greets us as a bright, sunshiny day. 🙂

So. Yesterday after Ben got his MIBG injection, we decided to head to the Empire State Building. It is truly an awesome experience. I loved the lobby. I loved all the art deco embellishments. I loved the thought of King Kong climbing up the side and fighting off airplanes. It’s a gorgeous building. We had to go through metal detectors once we got in line and my immediate thought was “uh-oh, Ben is radioactive.” We’ve had this experience before at the Denver Mint – Ben actually shut that place down thanks to his being radioactive! Right as I had this thought and was flagging down someone from security to let them know, the machine started beeping. Poor kid. He wasn’t even through it yet and it was going off. The security guard was really nice, though, and pulled Ben around to the other side. It was absolutely no big deal at all!

We bought our tickets and headed to the observation deck. The nice fellas selling maps gave all four of us the audio tour device for free (cancer-kid perk I’m sure). Once at the top, we ventured outside. Ben was not a fan of the height and Madeline was not a fan of the cold (how on earth did Fay Wray and Jessica Lange exist in their filmy, slinky gowns while braving not only a giant ape, but the NY weather?) so the kids headed back inside with Matt. I took the audio tour. It was cold but boy, was it an amazing little tour. I learned an incredible amount about NYC and I have to say that, thanks to this little endeavor, I feel much more better about NYC (I know, poor grammar, but I love saying “much more” together). I have a better idea of the layout now and understand lower, upper, midtown, etc.

After they pulled me away from the amazing Empire State Building, we decided to go to Times Square. Boy, is that place bright! It was fun to see. Ben and Madeline started getting tired but they perked up once we stopped in at Toys R Us. We rode the ferris wheel, looked at all the toys, got lost in the life-size Barbie Dream House (Mad spent an extraordinary amount of time in here). Then we walked over to Nintendo World (our second visit this trip). I’m sure this will be the store we go to every time we travel to NYC – it really is awesome.

We caught a cab back to RMH and found they were hosting an Israeli folk dancer and a buffet dinner featuring falafel and hummus. Ben caught sight of the food and immediately said “pass”. Fortunately we had some left-over pizza in the fridge. 🙂 The folk dancer was a lot of fun, Madeline danced with him for about an hour. She had an absolute blast! Then we had gigantic, yummy cupcakes for dessert. Red velvet with cream cheese frosting? HEAVEN.

The Ronald McDonald House does a lot of amazing things for the families… tonight they had a “chef cook-off”, kinda like the Iron Chef. It was televised locally and then the food made during the cook-off was passed around for all to enjoy. So far, they’ve had something available for dinner every single night we’ve been here. Next time you roll through the drive-thru at McD’s, throw a few coins in the RMH box. It’s such a wonderful charity.

I know, you’re wondering how today went. Well, Ben and I got up early and walked over to MSKCC. We checked in and started the MIBG scan a bit after 8 AM. For those of you new to our experience, the MIBG scan is a radioactive who-zi-whats-it (yes, that’s the technical term) that attaches itself specifically to neuroblastoma cells. It’s usually the best way to see if there’s any disease in the body. It was long… 90 minutes… and unlike Colorado they didn’t periodically stop to let Ben get the wiggles out. That’s a LONG time for an eight-year-old to stay still so we had some big struggles with this morning.

After, we needed to have a spec CT done. I didn’t know what this was, but I guess it’s something that every new MSKCC patient has to do. They didn’t account for it in Ben’s schedule of events, so this little 30 minute scan threw the rest of the schedule off. I have to insert a complaint here, I AM NOT a fan of the receptionist in the radiology department. For those of you who remember, I also had trouble with the radiology receptionist in Denver. I’m thinking that my entity and the personality that embodies all radiology receptionists are just natural enemies. Sort of like anyone born in the year of the monkey should avoid anyone born in the year of the tiger. It’s just a fact that cannot be avoided.

After the spec CT, Ben had to drink the contrast for his CT scan. He did a great job drinking the foul-tasting elixir in record time (since we were running behind) and headed back to radiology. Usually, this is a very speedy scan, but this one took about 25 minutes. While standing behind the thick plate glass watching my son move in and out of the large, circular machine, I listened to the staff debate the new MSKCC dress-code for staff members. I learned a lot about what would pass as a proper shirt to wear under scrubs and was relieved to hear that all female staff are required to wear a bra.

Then we headed back up to the Oncology floor. I need to throw in here that this is the MOST confusing building I’ve ever experienced. Different elevators go to different floors and you have to land on Michigan Avenue at precisely 1:47 in order to catch the magic train that takes you to the town that may, or may not, have a bus that will take you to the oncology floor. Okay, I made that up. But it is pretty darn confusing. Next time I’m leaving a trail of spray paint.

They were waiting for us upstairs so they whisked Ben back into the procedure room. I told them that had they equipped us with a MSKCC GPS unit, we would have been a bit earlier. I had a minute to chat with Bean before they sedated him. He was nervous. He kept hugging me and saying how he wished that none of this had ever happened to him. Me, too, Ben. Me, too. The docs gave him a bit of propofol (yes, the Michael Jackson drug) and he was out. I gathered my stuff and left the room, walked out in the lobby, and cried a little bit.

I settled in with a magazine and looked at pretty pictures – that was all my mind was good for at that particular time. Moments later, the doc came out and told me that Ben tolerated the procedure well. Once he woke up they would bring him to me. For those of you who need a refresher on what the bone marrow biopsy is, they take a giant needle, push it into your “butt dimples” and take out a cross-section of bone. Here at MSKCC, they also take samples from the front hips as well. So, four ouchies instead of his usual two. This test is used to find out if there’s disease in his bone marrow, which we DO NOT want to see. It makes treatment so much more difficult. When he was first diagnosed in 2004, he was loaded with disease in his bones and bone marrow… so far this time he’s had no evidence of disease in his marrow. Whew.

The nurse brought my sleeping baby out to me in the lobby. He snuggled into my arms as I sang to him. He likes it when I sing to him. He slept for about half an hour resting comfortably in my arms.

Then we met with Dr. Kramer. I’m thinking I love her. She’s very kind and patient and adores Ben (who doesn’t?). She said that his MIBG scan is NEGATIVE (yay!) but his CT scan still shows a spot (darn it all!). This means that we will have to come back to NYC in a couple of weeks for Ben to have surgery with the famed Dr. LaQuaglia. He is the absolute BEST. If there’s something in there, he will find it and excise it.

Then, I stole a wheelchair and rolled Ben back to the RMH since walking would be a challenge for my sedated, aching, dilaudid-fueled kiddo.

Tomorrow, we’re going back to Colorado (unless we get snowed in). Monday afternoon we will go back to Denver Children’s and start a very low dose of chemo just to ensure that the crazy spot they found on the CT scan doesn’t grow before Dr. LaQuaglia can get in there to remove it. We’re thinking there will be about three weeks before we’ll get in for surgery. Then, after he recovers from surgery they’ll hit him with the high dose chemo that will make him sick as a dog and knock out his precious peach fuzz that is slowly growing back in. Then, once he rebounds from chemo, we’ll start the 3F8 antibody. Then he’ll be all better. Forever.

Currently Ben is trying to get comfortable. He can’t lay on his back and he can’t lay on his stomach due to “the holes” he had drilled into him. That’s what he keeps telling the rambunctious Madzilla, “Be careful! I have holes in me!” If the weather holds out, tomorrow we’re going to go to Chinatown and maybe see the Statue from the Staten Island Ferry. Or we’ll just save it for next time.

Thanks for all the love and prayers, friends. We sincerely appreciate your support and the fact that you muddle through my musings to glean a bit of information about the Fabulous Bean.

More later. 🙂

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1 Comment

  1. Great post, as usual! You are a very gifted writer. Hurry up and write that book so we can retire.

    [WORDPRESS HASHCASH] The poster sent us ‘0 which is not a hashcash value.


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